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By Billy Pickens, Intern
As a senior in college, I have had the pleasure of taking many classes in which I received a great deal of powerful information. One thing that made every college class worthwhile was the fact that, no matter how important I felt each class was, I still learned a valuable lesson that would leave a lasting impact on my life. Some of these lessons were immediately recognizable. However, there were some that did not occur to me as extremely valuable until I really thought about them.
One specific example of the latter was a lecture given by my General Psychology professor. In this lecture, we were discussing the history of mental illness in America and how it has been dealt with over time. My professor made the point that prior to scientific research and progressive movements within the disability community, those with disabilities were often seen as useless or less than human. Many were seen as being under the spell of a demon and therefore were locked away, abused or even killed simply because they did not live up to the standard of what was considered “normal.”
While I found this history both riveting and disheartening, it was a story I had heard too many times before as a person with a disability. For that reason, at first I did not see it as anything inspiring or thought-provoking. It was not until I began serving on the Student Advisory Board for my school’s Disability Services that these stories gained more impact and became more important to me.
As a student advisor, one of my tasks is to go into classrooms throughout my school and talk to students about how I have managed to live a normal, productive life despite my disability. My peers and I share stories of how we had been underestimated, written off and treated unfairly by many who had negative perceptions of persons with disabilities. It was through our stories, and students saying that our testimonies really changed their own perspectives, that I was reminded of my professor’s lecture.
I began thinking more about my own journey and how I found myself in college striving for employment, yet many of my friends with my disability are still relying heavily on the support systems around them. While pondering the perceptions of the world and the history of disability culture, I came to the conclusion that one of the key reasons why many with disabilities struggle to flourish in today’s society is society’s attempt to change a person’s disability instead of adapting to it. However, I believe that this is not so much the fault of society in general, but the support system of the person with a disability.
From the time I was born, my parents were prepared for the possibility that I would be totally blind with gradual hearing loss. There had been a slight hope that maybe I would be born completely normal. However, being that my condition was genetic and the chance of me inheriting the gene was extremely high, my parents knew that this was highly unlikely. Even so, I was raised normally, participated in activities relevant to my age group and attended public school.
There was always the lingering conversation of restoring my sight. I remember from a young age attending conferences centered around vision restoration. While I willingly agreed to attend these conferences with my parents, restoring my sight was hardly ever a desire of mine. What is the point? I am achieving my goals despite my blindness and have no time to focus on changing it.
I say this to say that if you are a person who has a disability or are associated with someone who has a disability, the last thing you should do to help that person is try to cure them of that disability. I am not saying that if the opportunity to cure someone of a disability arises you should not benefit from it. However, you should focus more on adapting to the present situation than trying to find a cure. In my opinion, this is the most important characteristic of someone who overcomes obstacles and turns perception into progression.
We have come so far as a culture in awareness of our value to society. We are showing the world each day that we can break down barriers, and do it with our disability. People like Helen Keller, Louis Braille and others were not respected just because of their disability, but because of what they chose to do with that disability. Those who embrace their disabilities and use them as motivation instead of defeat will have the main ingredient in conquering any obstacle that comes their way. Likewise, people who support those with disabilities may experience a shift in their own perspective when they focus more energy on teaching skills to successfully adapt to the environment. Through this approach, they will see how obstacles are conquered and real progress is made.
Q: What are private schools required to do in order to serve students with disabilities?
A: Unlike public schools, private schools (K-12) are not required to follow federal and state special education laws. If parents make a decision on their own to enroll their child in a private school, they should understand that the school has a lot of power to decide how much they are willing to do in order to serve that child. This is true whether the child has a disability or not.
Private schools do have to comply with the Americans with Disabilities Act (ADA). The ADA requires basic access to a private school’s buildings and programs. Students cannot be discriminated against, treated unequally, or isolated because of their disability. Private schools can set admission requirements, but they cannot intentionally screen out applicants with disabilities who are otherwise qualified to attend.
Private schools must make “reasonable modifications” to policies, practices and procedures to provide equal access. They are required to provide aids and services to allow people with vision, hearing or speech impairments to communicate effectively. Private schools are not required to provide modifications, accommodations, aids or services that would create an excessive burden for them. When deciding exactly how to meet the needs of a student, parent or employee with a disability, factors can be considered such as how the cost of the aid or service compares to the overall resources available to the school. If resources are very limited, a school can choose less expensive options.
Private schools do not have to provide special education instruction or services like speech, occupational or physical therapy.
Private schools do not have to fundamentally alter their program in order to accommodate a student’s disability. For example, a school that has an identity based on having an advanced curriculum can remove a student who was working well below grade level. A school that focuses on hands-on learning in the natural outdoor environment can refuse to serve a student who is extremely fearful of most animals and insects.
We are often asked about what private schools are required to do by law. However, there are many private schools that voluntarily go beyond the minimum requirements. Some offer extra academic instruction for struggling students. Some will try hard to work with a student who has behavior challenges. If your child has a disability and you are thinking about private school, you should look at more than test scores or college acceptance rates. Ask if they offer additional support for students who need it. Pay attention to body language and other clues when you speak with school staff. Those may tell you a lot about how willing the school is to make an extra effort to help all of their students succeed.
At this very moment, many parents are very worried about the possibility that their child might be required to repeat their current grade. Many of these parents have received one or more letters notifying them that their child was at risk for retention because they were not meeting grade-level expectations for learning. These are often form letters that are sent automatically based on the child’s performance on academic testing done at several points during the school year. In many schools, the warning letters do not take into account that the student may have an identified disability.
With only a couple of exceptions, North Carolina’s public school law gives principals sole authority to determine what grade a student is assigned to. The exceptions include 3rd grade, when the Read to Achieve law mandates retention of any child who does not demonstrate “proficient” (grade level) reading skills on the End-of-Grade (EOG) assessment. Principals can request a “good cause exemption” for students who meet certain criteria. Students who have Individualized Education Programs (IEPs) based on disabilities that impact reading are eligible for such an exemption. The tricky thing about this is that the principal is not required to request the exemption. They can still choose to retain students who have this kind of disability. In high school, students are assigned to a grade based on the number and type of course credits they have earned. However, a high school principal can decide to assign a student to a homeroom that is different from the grade shown on their official transcript.
Parents do not have to just sit and wait anxiously for that last report card. There are things that they can do to try to help their child.
If you get a letter in January or February warning you about possible retention, you can contact your child’s teacher(s) to get more information about why the letter was sent. If your child is not learning at the expected rate, you can ask about what actions have been, or can be taken, to help them make more progress. For a child who does not have an IEP, this might mean starting or intensifying research-based interventions as part of a multi-tiered system of support (MTSS).
If your child has disability and receives supports as part of a Section 504 Accommodation Plan, you might want to consider asking for an evaluation to see if the child now needs special education services. If your child already has an IEP, you can request an IEP Team meeting to consider making adjustments to instruction and/or supports to improve learning.
Under any condition, it would still be a good idea to meet with the school principal to discuss your concerns about possible retention. Most public schools are too large to expect a principal to know each child well. You can discuss potential pros and cons for your child. For example, you can explain why it might make more sense to promote your child to the next grade with targeted supports and services, than to require the child repeat the entire curriculum of his/her current grade. You can also take that opportunity to share additional information about your child that the principal can consider as he/she makes their decision.
The principal does have the authority to make the final decision about retaining or promoting your child. However, you can try to influence that decision before it is made. You can also continue to advocate for your child to get the instruction and services that he/she needs next year, regardless of the grade they are assigned.
As one school year winds down, its good to start thinking about the next year. Perhaps you have a child who will simply be moving from one grade to another in the same school. Maybe your child is facing a more dramatic transition such as:
- Starting Preschool for the first time
- Entering Kindergarten
- Moving from Elementary to Middle School
- Beginning High School
It is time to move from thinking to planning! Take steps to make this transition as smooth as possible by gathering information about what might be coming up, and sharing important information about your child with the right people.
If your child is staying at the same school, find out what might be different for the coming year (e.g. class size, number of teachers/aides, daily schedule, curriculum, meal times, etc.). Each of these factors could impact your child and may require some changes in how your child’s needs are met. You might also want to speak with the Principal about the classroom environment and/or teacher styles that are likely to be successful or unsuccessful for your child. Hopefully the Principal will use this information to make a good match when class assignments are made.
If your child is moving to a new school, you will still want to know the things mentioned above, PLUS:
- Visit the new school to check out the physical layout and ask about a typical day
- Think about any possible barriers or challenges that your child might have in the new setting
- If your child is entering middle or high school, ask about required courses and any options that may exist. Some courses are offered at multiple difficulty levels, and there may be other ways to help make sure that your child gets a course schedule that will work for him/her
- Request a transition IEP meeting to discuss and make decisions about any changes that may be needed in the accommodations, modifications, supports, services and/or goals
- For many children, it is helpful for them to have an opportunity to walk through the new school and possibly see their classroom(s) and meet their teacher(s) sometime before school starts. There may also be other steps that you can to help make this transition a smooth one.
Most importantly, stay positive and help your child feel good about the upcoming school year!
Many parents are so busy trying to get their child through the school year successfully that they do not think about possible summer activities until summer is almost here. By then, many camps and programs have already filled up. Parents may find themselves in a mad scramble to find ways to keep their child occupied. My biggest tip for parents, especially parents of children with disabilities or special healthcare needs, is to start searching and planning as early as possible!
If you find a program that seems right for your child, but no space is available for this year, find out when you should contact them about enrollment for next year. You can also ask to be put on their email list, if they have one. Use calendars and any other tools that work for you to set up a future reminder.
Each year the Family Support Program at the University of North Carolina School of Social Work creates a directory of summer camps and programs for children who have various disabilities. The 2018 Summer Camp Directory also includes tips for conducting your search and questions to ask to make sure that the program is a good match for your child. In some larger communities a local newspaper, parent magazine or other organization create similar listings of summer camps, programs and activities in that area.
Many local Departments of Parks and Recreation offer summer day camps, and some have “therapeutic recreation” programs designed specifically for children and youth with disabilities. However, regular camp programs supported by public funds have an obligation to make reasonable accommodations that would make it possible for many children with disabilities to participate in their program. Some of the Y’s are also making a deliberate effort to be more accommodating of children with special needs.
Call around, talk to friends and acquaintances, check out public libraries, museums, movie theaters, bowling alleys, skate rinks, churches, public and private schools, tourist attractions, scouts, 4-H clubs, etc. for summer offerings that might be of interest to your child. Parents often have to create a patchwork quilt of activities in order to keep children constructively occupied throughout the summer. At home, consider using educational websites, software and activity books to keep the young minds active and skills from being lost. Many disability-related websites also offer summer tips.
The key message is to start planning early… really early! That is when you will have the most options and a chance at getting financial assistance, if needed. With planning, your child can go from having a ho-hum summer to a truly great one!
In many IEP meetings one of the school system staff members is introduced as “the LEA” without further explanation. If there is a lot of discussion and debate around an issue, it will often appear that this LEA has more influence than most other members of the IEP team. This may not seem fair to parents, who usually are outnumbered in the first place. However, it is important to understand that the LEA Representative does have a unique role in the IEP process.
First, let’s clear up some education jargon. LEA is short for Local Education Agency. Each individual school system that has a central administrator, usually known as the Superintendent, and School Board is actually a distinct LEA. Some LEAs are county-wide, some just cover a particular city, and some are public charter schools. Charter schools will typically have a Board of Directors rather than an elected School Board, and their central administrators have a variety of job titles, such as Headmaster, Dean or Principal.
IEP teams are required to include someone who can represent the LEA. The person who serves in the role of LEA Representative must meet certain criteria:
- Be qualified to provide, or supervise the provision of special education instruction;
- Be knowledgeable about the general education curriculum; and
- Have knowledge of the resources available to that LEA.
Every student with a disability who qualifies for special education services must be provided with a free appropriate public education (FAPE). It is the LEA (school system) that has the responsibility for delivering FAPE to its students. It is also the LEA that is held accountable when that does not happen.
To a large extent, the contents of an IEP define what FAPE looks like for that particular student. This makes the decisions of the IEP team extremely important and legally binding. IEP team decisions are expected to be based on data and the input of every member of the team. Most of the time IEP teams are eventually able to reach decisions that everyone can live with. That’s called reaching a consensus. If the team fails to reach consensus about a relatively minor issue, the matter may be put on hold until more information can be gathered.
When the IEP team cannot come to agreement about a really important proposal, the LEA Representative has the authority to make the decision. This allows the team to move forward with finalizing the IEP so that the student can be served. Having a clear decision also gives the parent the right to formally challenge that decision through one of the options available for resolving special education disputes. Those options are detailed in the Procedural Safeguards Notice* that is often referred to as the “Parent Rights Handbook.” Parents should be given a copy of the handbook at least once each year, but they can ask for a copy at any time.
In rare cases, individuals who serve as the LEA Representative over-use their decision making authority and the IEP team is not able to function properly. If this happens, a higher-level special education administrator should be notified so that corrective action can be taken.
Our federal special education law places a lot of importance on the role of the parent in decision making. It is understood that parents’ number one priority is looking out for the best interest of their child. But what happens to those children who don’t have a parent who can speak on their behalf?
First, let’s look at how the Individuals with Disabilities Education Improvement Act of 2004 defines “parent.”
- A biological or adoptive parent of a child;
- A foster parent, unless state law, regulations, or contractual obligations…prohibit a foster parent from acting as a parent (e.g. therapeutic foster parent);
- A guardian generally authorized to to act as the child’s parent or authorized to make educational decisions;
- An individual, with whom the child lives, acting in the place of a biological or adoptive parent, or an individual legally responsible for the child’s welfare; or
- A surrogate parent who has been appointed in accordance with IDEA ’04
For children who are wards of the State, or for whom no parent can be identified or located, or unaccompanied homeless youth, a trained volunteer must be appointed by the public school system, or local education agency (LEA), to protect the rights of the child in special education processes. The LEA has to develop a procedure to identify children who may need a surrogate parent, and a way to assign surrogate parents to those children. For children who are wards of the State, the judge overseeing their case also has authority to appoint a surrogate parent.
Surrogate parents are involved in the same decisions that require parent participation. This includes decisions related to evaluation, determining eligibility for special education services, development and review/revision of the Individualized Education Program (IEP), educational placement and the provision of a free appropriate pubic education (FAPE). Surrogate parents also participate in the Manifestation Determination Review meetings that look at the possible role of disability when students are facing disciplinary changes in placement.
Surrogate parents must have sufficient knowledge and skills to adequately represent the child so many LEAs provide training to volunteers. Surrogate parents have access to the child’s educational records and should be expected to have some familiarity with the child and his/her needs before attending an IEP or other school meeting.
Good surrogate parents provide an important service to children that may have no other adult who can stand up and speak up for them when critical decisions are made about their education. If you, or someone you know has the time and flexibility to volunteer as a surrogate parent, please consider this as a great way to make a real difference in the life of a child who is facing multiple life challenges in addition to having a disability.